Let me set the scene for you:
I'm sitting on the couch in the living room with my laptop open. Jason is in the kitchen, which is open to the living room, cleaning off the counter. I'm not sure but the television might be on, and if not, the stereo is.
Suddenly I say,
"Do I sometimes have long pauses between words when I'm speaking?"
Jason responds without missing a beat, "Yes. And you still think that you don't have MS?"
Who does he think he is?! Smart ass.
Maybe I do. Maybe I don't. Maybe I was reading an article about MS symptoms, maybe I wasn't. Maybe I knew the answer the question.
Maybe I did.
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
I'm Scared For My Brain
Posted in confusion, fear, symptoms on by
My brain is often the butt of family jokes. I even make them myself. Generally, the jokes come about after I have done something strange or said something strange. Or better yet, when I do math in my head faster than anyone else in the room (pre-MS, math was NOT one of my strengths)
But sometimes I worry about it. I have noticed lately that I am processing written words incorrectly (and seeing words that aren't there). Last night, I saw the word "should" and I read it as "shold" (rhymes with cold) and I didn't understand it. I read it a couple of times before I realized my mistake. This is only one example of something that has happened to me a few times in the past week.
Tonight, while making dinner, I had another "moment". I got out a regular frying pan (not the one we usually use), chosen for size and flatness. Cooking something new, I had to read the instructions, which said to use a non-stick frying pan. "Perfect", I thought, I picked the right frying pan without even knowing.
Olive oil in, Chinese dumplings in, just add water and cover. So easy!
Until I had to turn the dumplings over. They were stuck to the pan - stuck. That's when it dawned on me: the instructions said to use a non-stick frying pan. Not a pan that doesn't have a non-stick coating (which I selected) but a pan WITH a non-stick coating. I processed it incorrectly and was confident enough in my processing that I mentally patted myself on the back when I did read the instructions because I was one-up, so to speak.
Early on in my diagnosis, I didn't trust myself when reading instructions, in particular recipes. Not that there had been an event to give me pause, I just wasn't confident. I needed to read and re-read. Well now I have an event - and it scares me.
Tonight, while making dinner, I had another "moment". I got out a regular frying pan (not the one we usually use), chosen for size and flatness. Cooking something new, I had to read the instructions, which said to use a non-stick frying pan. "Perfect", I thought, I picked the right frying pan without even knowing.
Olive oil in, Chinese dumplings in, just add water and cover. So easy!
Until I had to turn the dumplings over. They were stuck to the pan - stuck. That's when it dawned on me: the instructions said to use a non-stick frying pan. Not a pan that doesn't have a non-stick coating (which I selected) but a pan WITH a non-stick coating. I processed it incorrectly and was confident enough in my processing that I mentally patted myself on the back when I did read the instructions because I was one-up, so to speak.
Early on in my diagnosis, I didn't trust myself when reading instructions, in particular recipes. Not that there had been an event to give me pause, I just wasn't confident. I needed to read and re-read. Well now I have an event - and it scares me.
Shit - I Really Do Have MS!
Posted in MS, MS hug, symptoms on by
My annual "check-in" with my MS neuro was last week. I finally got to meet "the new guy", "the new guy" who is "tracking" my disease.
*okay, maybe I have started this off on the wrong foot...a bit too sarcastic. Let's try this again:
My annual appointment with my MS neuro was last week. I finally got to meet the new doctor who writes me prescriptions for months worth of Rebif at a time (not one month at a time like the last guy). The new doctor doesn't wear a scrub shirt either.
*I couldn't help that one.
Carrying on...
I told the new doctor that I don't believe I have Multiple Sclerosis. He didn't bite...not even a nibble. Not even when I said it a second time. I guess it's a good thing he didn't bite, because he is trying to help me with my fatigue (unlike my GP), my jumpy legs, and my relationship with my Rebif.
And now for the rub - I no longer believe that I don't have MS. Thanks to the MS Hug.
The MS Hug is not how it sounds. Hugs make you feel comforted, loved, safe...the MS Hug makes you feel suffocated, scared. It can be painful, annoying and unwanted.
And I got my first hug, (at least that I noticed) last week. I thought that I was having a heart attack. It started with a crushing pain in my chest, right in between my breasts. The pain traveled to my left shoulder, and then down my left arm, and the chest pain radiated through to my back. It was difficult to breath: I was scared and agitated. In my mind, I was arguing with myself over whether or not I should call 9-1-1. The "event" lasted just under ten minutes.
Over the next few days, the pain returned to my shoulder and arm: it felt like my arm was asleep, but with pain. I have had tightness in my chest, and at times, it's hard to take a deep breath. The tightness in my chest is something that I have had with my MS from almost the beginning. But the pain in my chest, and chest pain that is accompanied by shoulder and arm pain is new.
I had heard of the MS Hug (also known as the Girdle). I thought that maybe the annoying numbness over my right ribs was "The Hug". Now I see that it is more funny (sometimes it tickles) and "The Hug" is not funny. It does not tickle. And without discussing it with my mom, I probably would have continued to think I had a heart attack (I even took an aspirin the second time), and been too embarrassed to call 9-1-1.
*the MS Hug is caused by a lesion on the spinal cord
*tiny muscles in between each rib go into spasm (nerves control muscles)
*feelings can happen anywhere in between the waistline and the chest (rarely up to the neck)
*worse during fatigue or stress
*can last for minutes or weeks
So - it finally hit me - Shit. I really do have MS.
*okay, maybe I have started this off on the wrong foot...a bit too sarcastic. Let's try this again:
My annual appointment with my MS neuro was last week. I finally got to meet the new doctor who writes me prescriptions for months worth of Rebif at a time (not one month at a time like the last guy). The new doctor doesn't wear a scrub shirt either.
*I couldn't help that one.
Carrying on...
I told the new doctor that I don't believe I have Multiple Sclerosis. He didn't bite...not even a nibble. Not even when I said it a second time. I guess it's a good thing he didn't bite, because he is trying to help me with my fatigue (unlike my GP), my jumpy legs, and my relationship with my Rebif.
And now for the rub - I no longer believe that I don't have MS. Thanks to the MS Hug.
The MS Hug is not how it sounds. Hugs make you feel comforted, loved, safe...the MS Hug makes you feel suffocated, scared. It can be painful, annoying and unwanted.
And I got my first hug, (at least that I noticed) last week. I thought that I was having a heart attack. It started with a crushing pain in my chest, right in between my breasts. The pain traveled to my left shoulder, and then down my left arm, and the chest pain radiated through to my back. It was difficult to breath: I was scared and agitated. In my mind, I was arguing with myself over whether or not I should call 9-1-1. The "event" lasted just under ten minutes.
Over the next few days, the pain returned to my shoulder and arm: it felt like my arm was asleep, but with pain. I have had tightness in my chest, and at times, it's hard to take a deep breath. The tightness in my chest is something that I have had with my MS from almost the beginning. But the pain in my chest, and chest pain that is accompanied by shoulder and arm pain is new.
I had heard of the MS Hug (also known as the Girdle). I thought that maybe the annoying numbness over my right ribs was "The Hug". Now I see that it is more funny (sometimes it tickles) and "The Hug" is not funny. It does not tickle. And without discussing it with my mom, I probably would have continued to think I had a heart attack (I even took an aspirin the second time), and been too embarrassed to call 9-1-1.
*the MS Hug is caused by a lesion on the spinal cord
*tiny muscles in between each rib go into spasm (nerves control muscles)
*feelings can happen anywhere in between the waistline and the chest (rarely up to the neck)
*worse during fatigue or stress
*can last for minutes or weeks
So - it finally hit me - Shit. I really do have MS.
Oh Them Wobbles
Posted in symptoms, wobbles on by
"The fires are high". That is the phrase I turn to when I can't figure out why my symptoms (ie. numbness, swallowing, wobbles) return after being dormant, and I officially can't call it a relapse. The phrase came from the first neurologist who treated me, and I refer back to his wise (and helpful) words when I struggle with things MS related...except the other day.
When my wobbles perked up last week, without any provocation from my daily actions, I told myself that "the fires are high". I was okay with that: I would take some pills and stay out of the kitchen. But when they showed up yesterday while playing a board game with Jason (sitting still), suffice it to say that those words gave me little comfort. Had I put a little extra concentration in to the game? It sounds crazy, I know, but getting wobbles from thinking is not new for me, but it is new lately.
I don't enjoy math or science, but I do like to have concrete answers...so I ask....WHY?!
When my wobbles perked up last week, without any provocation from my daily actions, I told myself that "the fires are high". I was okay with that: I would take some pills and stay out of the kitchen. But when they showed up yesterday while playing a board game with Jason (sitting still), suffice it to say that those words gave me little comfort. Had I put a little extra concentration in to the game? It sounds crazy, I know, but getting wobbles from thinking is not new for me, but it is new lately.
I don't enjoy math or science, but I do like to have concrete answers...so I ask....WHY?!
how I'm dealing with word finding
Posted in laughs at home, symptoms on by
Once upon a time, I was articulate, well spoken, and used complete sentences in conversation.
Now, I pause...mumble, struggle to remember dates, times, words...
I'm sure that I have told you how I, lover of colour and all things design, have completely called something by it's wrong colour name...but at least I knew that it was a colour! On the other end of the spectrum, I fail to see the relationship between a "needle" and a "noodle", but my brain seems to think that in the moment, these two are interchangeable.
So I'm not sure if I should be bothered by my latest verbal gaffe. In some aspects, these two items totally relate to each other, and in another...not so much.
Jason and I own a six year old mid-high end luxury SUV (I'm telling you that, because it is important to the definition and description of the event). Over the past couple of years, it has had its share of recalls and other service related troubles...expensive troubles. This past week, she (the SUV) is in the shop again, and I called my parents to express my disgust with her.
In a voice heightened with emotion...in a conversation free of my usual sarcasm and jolliness...a conversation with serious undertones, due to the amount of dollars attached to the subject...I blurted out,
"It's a MELON!"
Chuckles. Laughter. Almost hysterics on all three telephone receivers.
"Don't you mean, "lemon"?
Right letters. Wrong order. At least it was still a fruit, albeit it sweet, not sour.
Emily
Now, I pause...mumble, struggle to remember dates, times, words...
I'm sure that I have told you how I, lover of colour and all things design, have completely called something by it's wrong colour name...but at least I knew that it was a colour! On the other end of the spectrum, I fail to see the relationship between a "needle" and a "noodle", but my brain seems to think that in the moment, these two are interchangeable.
So I'm not sure if I should be bothered by my latest verbal gaffe. In some aspects, these two items totally relate to each other, and in another...not so much.
Jason and I own a six year old mid-high end luxury SUV (I'm telling you that, because it is important to the definition and description of the event). Over the past couple of years, it has had its share of recalls and other service related troubles...expensive troubles. This past week, she (the SUV) is in the shop again, and I called my parents to express my disgust with her.
In a voice heightened with emotion...in a conversation free of my usual sarcasm and jolliness...a conversation with serious undertones, due to the amount of dollars attached to the subject...I blurted out,
"It's a MELON!"
Chuckles. Laughter. Almost hysterics on all three telephone receivers.
"Don't you mean, "lemon"?
Right letters. Wrong order. At least it was still a fruit, albeit it sweet, not sour.
Emily
really...I'm intelligent
Posted in cognitive, symptoms on by
*sigh*
Has the "smart" area of my brain been compromised by frayed wires (aka MS) or by a 26 month "hiatus" from "professional" communication?
It has been lovingly pointed out to me that both my speech and my written word (both grammar and spelling) have declined since I "got sick".
Even Jason's Scrabble scores are getting closer to mine!
I certainly can say that I notice a difference in my speech/conversation. I pause a lot more, and I have to search for words. And if I don't pause, or search...I use the completely wrong word! For example, I have repeatedly referred to my needles as "noodles".
I can say this...I type my blogs as if I am saying them out loud. Isn't that the best way to have a conversation with you?
So as for why my communication skills have declined...I don't know. Do I care....yes. A part of me believes that NOT working...just being casual, and hanging out at home has played a role. But I have read about other people living with MS who feel that at one time, they too were succinct, clear...or crap, I can't think of the words!
Thank goodness I'm still polite and cheery...that hasn't diminished!
Emily
Has the "smart" area of my brain been compromised by frayed wires (aka MS) or by a 26 month "hiatus" from "professional" communication?
It has been lovingly pointed out to me that both my speech and my written word (both grammar and spelling) have declined since I "got sick".
Even Jason's Scrabble scores are getting closer to mine!
I certainly can say that I notice a difference in my speech/conversation. I pause a lot more, and I have to search for words. And if I don't pause, or search...I use the completely wrong word! For example, I have repeatedly referred to my needles as "noodles".
I can say this...I type my blogs as if I am saying them out loud. Isn't that the best way to have a conversation with you?
So as for why my communication skills have declined...I don't know. Do I care....yes. A part of me believes that NOT working...just being casual, and hanging out at home has played a role. But I have read about other people living with MS who feel that at one time, they too were succinct, clear...or crap, I can't think of the words!
Thank goodness I'm still polite and cheery...that hasn't diminished!
Emily
can we co-exist?
Posted in symptoms on by
I haven't had the greatest 24 hours. I'm having to deal with a return of my "breathing problem". I don't think that I have ever discussed it in great detail here, because it hasn't been much of a problem since I started blogging. Sometimes, it shows up at bedtime, or when I am super fatigued. For the past 24 hours, it has been with me the whole time.
If feels as if someone is standing on my chest. This makes it hard to get a full breath of air, and I find myself having to take in a lot of deep breaths. Back in the fall (I think), I had some lung function tests, and saw a respiratory doctor. My MS doctor referred me to this specialist, suspecting that it was the MS causing my difficulties, but he wanted to make sure. Sure enough, my lungs are fine - no other medical reasons for my struggle and discomfort - just MS.
This scares the socks off of me. Last night, for the first time in a long time, I cried for myself. Is it really necessary for this stupid disease to steal my oxygen? Breathing, is an important function. Come on. I don't want this disease.
Sometimes, it's hard to stop myself from imagining what this disease will take from me. I don't think about it often, but I believe that if I am aware of the possibilities on some level, things will be easier to handle, should physical adaptations be necessary. So when I am forced to pull in a deep breath, I don't like where my imagination goes.
Just as frustrating, is the fact that I have had a really stellar week! Other than sleeping away Tuesday, I was busy this week...and ventured out on my own on two different occasions! I was not afraid! I made banana muffins! I did laundry! I raked the front lawn!
Oh...isn't that interesting. I did things like a "normal", healthy person, and got swatted down as if I had snatched a fresh baked peanut butter cookie off the cooling rack! What happened to the wobbles? Aren't they supposed to be my "reality check"?
I tried to trick my body. I thought that I could just keep taking the cookies. I was getting along really well with MS. But rather the trick was on me. I think that all along, MS knew that it was going to swat me. It was just waiting for me to feel good...normal.
So now I'm going to bed, and as per usual, I believe that tomorrow will be better.
Emily
If feels as if someone is standing on my chest. This makes it hard to get a full breath of air, and I find myself having to take in a lot of deep breaths. Back in the fall (I think), I had some lung function tests, and saw a respiratory doctor. My MS doctor referred me to this specialist, suspecting that it was the MS causing my difficulties, but he wanted to make sure. Sure enough, my lungs are fine - no other medical reasons for my struggle and discomfort - just MS.
This scares the socks off of me. Last night, for the first time in a long time, I cried for myself. Is it really necessary for this stupid disease to steal my oxygen? Breathing, is an important function. Come on. I don't want this disease.
Sometimes, it's hard to stop myself from imagining what this disease will take from me. I don't think about it often, but I believe that if I am aware of the possibilities on some level, things will be easier to handle, should physical adaptations be necessary. So when I am forced to pull in a deep breath, I don't like where my imagination goes.
Just as frustrating, is the fact that I have had a really stellar week! Other than sleeping away Tuesday, I was busy this week...and ventured out on my own on two different occasions! I was not afraid! I made banana muffins! I did laundry! I raked the front lawn!
Oh...isn't that interesting. I did things like a "normal", healthy person, and got swatted down as if I had snatched a fresh baked peanut butter cookie off the cooling rack! What happened to the wobbles? Aren't they supposed to be my "reality check"?
I tried to trick my body. I thought that I could just keep taking the cookies. I was getting along really well with MS. But rather the trick was on me. I think that all along, MS knew that it was going to swat me. It was just waiting for me to feel good...normal.
So now I'm going to bed, and as per usual, I believe that tomorrow will be better.
Emily
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